Connective Tissue Disorders, Collagen and CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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bluesky63
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Post by bluesky63 »

Cheer, I just got chills reading your reply and thinking about the idea that the vascular system could be the organ linking autoimmunity -- genetic or acquired. :-)
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eve
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Post by eve »

Very interesting. Many pwMS also seem to have higher occurence of psoriasis and asthma In both Endotholin 1 and Collagin III seem to play a role after doing some googling..
dx 2002,RRMS,  suspected begin of MS 1978 (age 10)
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cheerleader
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Post by cheerleader »

bluesky63 wrote:Cheer, I just got chills reading your reply and thinking about the idea that the vascular system could be the organ linking autoimmunity -- genetic or acquired. :-)

bluesky, that's what keeps me hanging 'round to see what these new doctors are going to add to the discussion. Now we have one of the world's Alzheimers specialists and other neuroscientists who specialize in the blood brain barrier working with the ISNVD, along with better imaging equipment...time's are changing. We understand how blood flow affects the body.

The discovery of the endothelium won the Nobel Prize in medicine in the 1980s...it totally redefined how we comprehend blood flow. The scientists showed how a nitric oxide--NO, a two atom gas we had thought was simply waste-- could completely change how the body functioned---whether it became diseased or healthy, and how it altered immune function. When I started writing about it on here in '08, there were some chuckles and comments about "we've been down the vascular path before." Not this path.

Here's the original reversing endothelial dysfunction thread in regimens, for those who may have missed it.
http://www.thisisms.com/ftopict-6318.html
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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PCakes
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Post by PCakes »

Dear Joan,

Please post your 'endothelial dysfunction home game' over here on TiMS.. good reminders c/w a smile. Win win. :)

Thanks,
pCakes
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astro
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Post by astro »

Great discussion. I'm heading to my neuro check-up next week, and he'll probably order some bloodwork. What test(s) should I suggest he add to get more insight into Collagen/Endothelin angle?

Thanks much.
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cheerleader
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Post by cheerleader »

astro wrote:Great discussion. I'm heading to my neuro check-up next week, and he'll probably order some bloodwork. What test(s) should I suggest he add to get more insight into Collagen/Endothelin angle?

Thanks much.
Endothelin 1 (ET-1) isn't a typical blood test, astro...and I have a hard time imagining your neuro would test it. Jeff's SED rate, CrP level and liver enzymes were all high when his blood was taken during his first flare, before any steroids or intervention. All of these tests show inflammation and endothelial dysfunction and are in a regular blood panel. He also had a petechial rash and mild jaundice. None of this is "normal" in MS, but his neuro said he must have been drinking. He doesn't drink...so she rolled her eyes, and sent us on our way with the DMD literature. That's why I started looking at the vascular connection.
Here's some research on high levels of endothelin 1 in pwMS:
OBJECTIVE: We tested the hypothesis that the plasma level of endothelin-1 (ET-1) is increased in patients with multiple sclerosis (MS). The peptide ET-1 is one of the most potent known vasoconstrictors. An increased level of endothelin could explain some of the vascular symptoms of these patients.

MATERIALS AND METHODS: A specific radioimmunoassay was used to determine ET-1 plasma levels. Twenty patients with MS were compared to 20 age- and sex-pair-matched healthy subjects.

RESULTS: The plasma ET-1 levels were, on average, 224% higher in the patients with MS than in the controls (p < 0.005). The mean ET-1 levels (mean +/- standard deviation [SD]) were 3.5 +/- 0.83 pg/mL (min 2.13, max 5.37 pg/mL) in patients with MS and 1.56 +/- 0.3 pg/mL (min 0.9, max 2.13 pg/mL) in healthy volunteers. Neither the different forms nor stages of MS had an influence on the results. The ET-1 level was also not correlated with the duration of the disease.

CONCLUSIONS: The plasma ET-1 level is markedly and significantly increased in patients with MS. Neither the cause of such an increase nor the pathogenetic role is known.
http://www.ncbi.nlm.nih.gov/pubmed/11315981
Good luck discussing endothelial dysfunction with your doc....
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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cheerleader
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Post by cheerleader »

PCakes wrote:Dear Joan,

Please post your 'endothelial dysfunction home game' over here on TiMS.. good reminders c/w a smile. Win win. :)
Thanks,
pCakes
It's on the endothelial dysfunction thread, PC...an oldie, but goodie :)
http://www.thisisms.com/ftopict-6318.html
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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PCakes
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Post by PCakes »

Thanks, Cheer.
If I may, here is the copy & paste from CCSVI in Multiple Sclerosis 'facebook'.. sans Snow White :(
A good way to start your day in a good way :)

The Endothelial Dysfunction Home Game--Fun for everyone!!

Back when I started writing about the endothelium (the lining of our blood vessels) and MS, before Marie and I started discussing Dr. Zamboni's research in 2008, I made a fun quiz for folks on This Is MS. It's meant to help you get an idea of how healthy your endothelium is, and how potential lifestyle changes might help your blood flow.

I thought it might be fun to bring it over here from TIMS, and see how everyone does. If you want, take the quiz and share your score with us....it's also a good way to see how life changes might help your endothelium and your general health.
Here's the quiz from TIMS---

Before you begin the game- a caveat...I am not a doctor, not a scientist, not even good at math. But if you like those magazine surveys (“How good a friend are you?” “What’s your EQ?” “What’s your real age?”) then feel free to play this, too.

Damage to the endothelium....

Add up your points for each of the following in the plus (+) column:

I smoke (everyday) +3

I smoke a few times a week +2

I’m a heavy drinker (everyday) +3

I’m a moderate drinker (3 times a week) +2

I’m a veteran +2

I’ve had/still have mono/EBV +3

I’ve had/still got cpn +3

I’ve got high blood pressure +3

I’ve got high cholesterol +3

I’m a diabetic +3

I have coeliac disease +2

I’ve got gingivitis +2

I’ve got mercury/amalgam fillings +2

I never see the sun +3

I never exercise +3

I have sleep apnea/insomnia +3

I get migraines +2

I have petechiae (leg spots) variscose veins, funny spots +2

I’ve had high liver enzymes +1

I eat red meat (yum!) +1

I have a major sweet tooth (and indulge) +1

I am under constant stress from life/work +3

I live within 5 miles of a major freeway/highway +2

I use chemical pesticides/fertilizers +2

I live within 5 miles of a smelting mine,oil refinery, superfund site +3

I live near high power lines +2

I use plastic products regularly (to eat from/drink/etc.) +1

Now for the minus column (-)

I exercise everyday -4

I exercise 3 times a week -3

I exercise 2 times a week -2

I use antioxidant supplements -2

I meditate/practice yoga/tai chi -2

I take a vitamin D supplement -2

I take a B-12 supplement -2

I take a vasodilator (LDN, bloodpressure med., herbs) -2

I eat organic produce -2

I am gluten free -2

I use a liver cleanse -2

I laugh regularly -2

I don't let stuff get to me -2

I don’t eat red meat or bad saturated fats -4

I don’t smoke, drink, only eat nuts and berries, live in the wilderness, work outside making arts and crafts projects while small animals do my housework and we sing lovely melodies and dance!!! -25 :lol:

There, now add up your columns. I'm at +4 for endothelial dysfunction and Jeff is at +5, even with all we've been doing. Still some more work to do. Maybe I can find some small animals to help us.

Remember, the theory is that endothelial dysfunction is a modern disease of our industrialized society- which allows a breech in the blood brain barrier. What ends up leaking thru the vessels can still vary from MS patient to MS patient. The amount of endothelial dysfunction (as measured by microparticles in the blood) is higher in MSers during relapse or in the progressive phase. ED does not cause MS...but it allows it to progress.

What's your score? How can you do better?
share and let us all know!

Joan
Cece
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Re: Collagen shifts in vein walls found in CCSVI

Post by Cece »

A *bump* because of Dr. Sclafani's post about Dr. Matteo Coen's IVEC presentation of an autopsy paper showing a preponderance of type 3 collagen. Type 3 collagen reduces elasticity and compliance.

Dr. Tucker mentioned elasticity as among the factors going into his equations. If our veins are less elastic because of the shift from type 1 to type 3 collagen, that will affect the hemodynamics, including the degree of reflux and focal points of hypertension that impact the blood-brain barrier.
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cheerleader
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Re: Collagen shifts in vein walls found in CCSVI

Post by cheerleader »

thanks for bumping, Cece...I saw Dr. Sclafani's post, and didn't have time today to dig this thread out again. Appreciate your sleuthing :-)
Also wanted to restate what Dr. Dake said about Jeff's veins that has stayed with me...he said he'd never seen anything like them before, that they seemed "sticky". I think this vascular wall remodeling and potential collagen shift may be a very important part of the equation. And addressing endothelial dysfunction and NO may be part of the solution. I really hope Dr. Tucker picks up on this thread in his new research....have posted it before for him, hope he sees it.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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ttucker3
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Re: Collagen shifts in vein walls found in CCSVI

Post by ttucker3 »

Your thread is on track with my thinking. On Saturday I shall be presenting at the VAC "CCSVI" Conference here in Ottawa and will describe my perception of how to insert 4D MRI flow quantification measurements along with "boundary condition" factors like gravity and vein compliance into computational fluid dynamics software to determine pressure distributions in the vein. I tried to copy and paste one of the ppt slides into this, but wasn't able to. I understand that VAC will be posting videos of the Ottawa Nov 5 presentations, so I expect that after some time this should be publicly available. In the meantime you may be interested in one initiative related to applying computation fluid dynamics to cerebral blood flow. There is an example from a Austrian company called RISC Software GmbH that is working with a number of universities and hospitals on CFD software for visualizing compliant blood vessels with pulative blood flow. A web site video clip(http://www.medvis3d.at/download/videos/ ... _small.avi) demonstrates their concept. The use of CFD (not necessarily MedVis 3D) looks to me to potentially offer a capability draw a lot of the loose MS symptomatic threads together to see composite flow and pressure effects in the veins and perhaps venules.

Trev. Tucker
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cheerleader
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Re: Collagen shifts in vein walls found in CCSVI

Post by cheerleader »

Excellent! Glad you found this thread---the collagen shift is an important discovery. As Dr. Lee said, he knew this happened in arterial disease, but didn't know it could happen in the veins. Here is a study on disturbed blood flow and vessel remodeling from last year--
http://www.sciencedaily.com/releases/20 ... 140922.htm

The new software sounds very interesting. Looking forward to seeing the P.P demonstration from the Ottawa presentation.
Please give Danielle a big hello from Joan!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Collagen shifts in vein walls found in CCSVI

Post by Cece »

I tried to copy and paste one of the ppt slides into this, but wasn't able to.
I upload images to www.photobucket.com click 'go to album,' click 'img code,' and that automatically copies the image code for the picture, then I paste here.

http://www.medvis3d.at/download/videos/ ... _small.avi
Ok, so first we see the blue vein at rest. This video is called "Pressure wave through aneurysm" and the aneurysm is the big ball on the top. The pressure wave comes through and instead of being a single forward-directional wave, it bounces all over the place, lighting up the aneurysm more than once.

The equations might be complex but, yes, it would be fascinating to see this modeled with the jugulars and the CCSVI blockages.
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Re: Collagen shifts in vein walls found in CCSVI

Post by PointsNorth »

Dumb question #?

Is there a way we could trick CollagenIII into reverting back to CI??

PN
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MrSuccess
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Re: Collagen shifts in vein walls found in CCSVI

Post by MrSuccess »

I offer the following scenerio ......

There is a empty room. It measures 10 feet high . The floor measures 10 feet by 10 feet.

At approximately the CENTER of this room ..... there hangs down from the ceiling ..... a long thin garden hose ..... that is slowly dripping water. Using only ONE finger ... I challenge anyone to stop the flow.Without touching any wall or ceiling. Good luck.

Now take that same hose ...... and with one finger ..... press the hose against any wall.

Understand CCSVI now ?



Mr.Success
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